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DAISY: A Data Information System for accountability under the General Data Protection Regulation.
GigaScience ( IF 9.2 ) Pub Date : 2019-12-01 , DOI: 10.1093/gigascience/giz140
Regina Becker 1 , Pinar Alper 1 , Valentin Grouès 1 , Sandrine Munoz 1 , Yohan Jarosz 1 , Jacek Lebioda 1 , Kavita Rege 1 , Christophe Trefois 1 , Venkata Satagopam 1 , Reinhard Schneider 1
Affiliation  

BACKGROUND The new European legislation on data protection, namely, the General Data Protection Regulation (GDPR), has introduced comprehensive requirements for the documentation about the processing of personal data as well as informing the data subjects of its use. GDPR's accountability principle requires institutions, projects, and data hubs to document their data processings and demonstrate compliance with the GDPR. In response to this requirement, we see the emergence of commercial data-mapping tools, and institutions creating GDPR data register with such tools. One shortcoming of this approach is the genericity of tools, and their process-based model not capturing the project-based, collaborative nature of data processing in biomedical research. FINDINGS We have developed a software tool to allow research institutions to comply with the GDPR accountability requirement and map the sometimes very complex data flows in biomedical research. By analysing the transparency and record-keeping obligations of each GDPR principle, we observe that our tool effectively meets the accountability requirement. CONCLUSIONS The GDPR is bringing data protection to center stage in research data management, necessitating dedicated tools, personnel, and processes. Our tool, DAISY, is tailored specifically for biomedical research and can help institutions in tackling the documentation challenge brought about by the GDPR. DAISY is made available as a free and open source tool on Github. DAISY is actively being used at the Luxembourg Centre for Systems Biomedicine and the ELIXIR-Luxembourg data hub.

中文翻译:

DAISY:根据《通用数据保护条例》建立的问责制数据信息系统。

背景技术新的欧洲数据保护立法,即《通用数据保护条例》(GDPR),对有关个人数据处理以及向数据主体告知其使用情况的文档提出了全面的要求。GDPR的责任制原则要求机构,项目和数据中心记录其数据处理并证明其符合GDPR。响应于此要求,我们看到了商业数据映射工具的出现,以及使用此类工具创建GDPR数据寄存器的机构。这种方法的一个缺点是工具的通用性,以及它们基于过程的模型无法捕获生物医学研究中数据处理的基于项目的协作性质。结果我们开发了一种软件工具,以使研究机构能够遵守GDPR的责任要求,并绘制生物医学研究中有时非常复杂的数据流。通过分析每个GDPR原则的透明度和记录保留义务,我们观察到我们的工具有效地满足了问责制要求。结论GDPR将数据保护放在研究数据管理的中心位置,需要专门的工具,人员和流程。我们的工具DAISY专为生物医学研究量身定制,可以帮助机构应对GDPR带来的文档挑战。DAISY在Github上作为免费开放源代码工具提供。卢森堡系统生物医学中心和ELIXIR-卢森堡数据中心正在积极使用DAISY。
更新日期:2019-12-04
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